New Lyme Disease Book

There's a new Lyme disease book out, and you can check it out and purchase it here. 

The interesting part is that the author is the founder and a member of the IDSA, the Infectious Disease Society of America. This is the organization that denies the existence of chronic Lyme disease.

I wonder what repercussions Dr Waisbren is facing for writing this book...

It's supposed to be highly informative and helpful, though I haven't read it yet. I'll let you know when I do, and you do the same.

Go Lymies!

The Infectious Disease Society of America, or IDSA, asked a question on Facebook that they didn't really want the answer to. But they got it anyway. Please give them yours, as well.

http://www.facebook.com/IDSociety/posts/357764004239867

Pushing Through

I had a really bad day this week.

Clammy, cold skin, twitches and tremors, faintness, vertigo, pain, and so on. The next day I was very emotional, tears dripping through my makeup on my breaks at work. I kept calling my partner for help, but she didn't know what to do. She told me to come home, but I wasn't going to leave work.

I still don't know if either of those miserable days were due to Lyme disease or other things. They certainly were major exaggerations of feeling badly.

So what was I to do? I was at work, feeling sick as anything, feeling desperate and humming with pain and misery. On Tuesday, my legs were wobbly and throbbing and I could hardly walk. On Wednesday, I felt that there was no point to life and I could hardly stop crying.

But I did it. Not everyone is well enough to (some people with Lyme are bedridden, for example), but a lot of us are well enough to do at least a little bit of living every day. I am so proud of myself for pushing through the pain.

I was talking to my good Lymie friend K. the other day--in fact, my only Lymie friend in all my life--and I realized something. She is on disability, she is an intelligent twenty-eight year-old with no college degree and no work experience, and almost every day, she goes to the infusion clinic for her IV drip and goes to specialists for her many health problems, which are largely a result of the Lyme disease.

I felt for her so much. I'm not saying she has a miserable life at all; she has a loving husband, supportive and generous parents who are also sick with Lyme, she is lovely and sweet as anyone I've ever met and she has many talents and lots of potential.

But that's the part that worried me, the fact that she is so talented and smart. Because once you're on disability, I think you basically stagnate. There is no one to impress, nothing to prove except that you're actually very sick. No hope for a raise or work that you'll find engaging and consuming. Nothing really to consume you at all.

This is exactly why I am glad I'm not on disability. Without it, life is difficult. I have to struggle through my illness to get through the days. I have to fight off and prepare for the worst of the symptoms, the unbelievable pain and fatigue.

But my life is full, too. It's full of people, activities, ideas, and maybe most importantly of all, hope. A future. So I put up with the terrible symptoms, miss engagements once in a very rare while because they are too much to handle, and most of all, feel carried away on a current of pride every time I push through and show up, succeed, prevail.

I think K. knows that her life could be so much more. I have so much faith in her. She's quite ill, sometimes as sick as me and sometimes worse, but she is a brilliant starburst of kinetic energy, wit as sharp as the edge of a knife, a hapless smile, hope flickering like fireflies in a jar.

So K., if you're reading this, please know that I love you and I am sure of you. I want you to be a happy person. I want you to succeed, to know that the Lyme hasn't gotten you in the end. I want you to push through your symptoms whenever it's possible to do so, to get that education you desire, to become what you want to be, to be with whomever you want to be, to feel the world uncoil at your fingertips. I'll be there for you every step of the way.

Attitude

Lymies: we happen to suffer from a disease that is extremely controversial.

With Lyme, it's hard to find someone who will treat you. There's a constant onslaught of doubts being pelted at us as a group, even as individuals, doubts about whether chronic Lyme exists, doubts about whether the treatments are valid and effective, doubts about whether each of us actually has the disease or whether we have some psychological need to create disease where none was before.

It requires an incredible amount of resolve and self-assuredness to know what your reality is, to be sure that you are sick and that your sickness is real, and that people who doubt you are WRONG.

I am amazed by all of you--by your trust in your own experiences. For eleven years, from age ten to twenty-one, I had Lyme, but after a brief treatment when I first manifested the classic rash (erythema migrans), it was forgotten and it took me those full eleven years to assert myself and to insist to my parents and doctors that I was still sick and needed treatment.

Granted, to become sick at age ten is very different from becoming sick at age thirty or fifty. You don't have a lifetime of wellness to compare your new illness to. You don't have confidence, or certainty in yourself. You defer to the adults around you.

But even so, after I was re-diagnosed with Lyme at age twenty-one, things were complicated. I was treated with oral and intravenous antibiotics for a few months, and then I fell back into a state where I didn't believe my own experience of my body, and I started to wonder if maybe I didn't have Lyme after all (my blood tests were consistently negative--though my neurological scans and other tests were markedly abnormal) and I stopped treatment, threw in the towel, and stopped discussing Lyme.

I wouldn't talk about it, even with my family.

A few months ago, right before I turned thirty, the movie "Under Our Skin" came out, and the realization that I had been sick, was still sick pulsed through my veins. And yet it took me until a few weeks ago to really, truly believe it, and throw myself into treatment. Now my blood tests are positive again.

Now I want to get better. Twenty years after the tick bite.

I must beg a few things of you, Lyme community.

1. Know your body, your reality. If you're really sick, insist on getting treatment. Find an LLMD and get better.

2. Don't be afraid to get better. Even if you've been sick for years or decades, health is the goal. Even if you've gotten used to being sick, to having sickness prop you up like an ugly crutch, try to get better. For example, I realized today that sickness is an excuse for me. Yes, it's a real excuse, not one I've invented, and I never lie and say I'm sicker than I am, but it's also comforting to know that sickness is a good explanation for why I'm thirty and haven't started my career yet, for why I sometimes have a messy home, etc. Again--it's all true, but it's comforting to have the excuse anyway. If that's how it feels for you, too, get past that. Get better.

3. Try to avoid seeking treatments that don't work. I'm thinking of people I have met who do expensive, bizarre things to get better. Unless the treatment has been researched and recommended, or at least has proven to be successful by a great number of anecdotes, proceed with caution. I say this for a few reasons. One is that you might end up spending tens of thousands of dollars on things that don't even work. Another is that we Lymies have to fight really hard to seem sane and not hypochondriacal, like people who get a kick out of being sick, and the weirder we are, the harder it is to be believed by the medical community.

4. To continue from point 3, try HARD to seem very level-headed and practical, even if your Lyme is the kind that makes you feel the opposite way a lot of the time. We must, must, must join together and not come across as flaky. People don't believe us. Doctors lose their licenses for treating us. The less floopy we are, the more we can further our cause.

5. Please do not blame every problem in your life on the Lyme. I've met people who blame the silliest things on Lyme disease. While it's true that Lyme can cause a medley of strange, transient symptoms, there are lots of weird things that happen to you and your body that have nothing to do with Lyme, or maybe it's not the Lyme specifically, but a side effect from your medications, or the psychological fallout from having a chronic disease. If you cry less than you used to, it's probably not the Lyme disease. If you no longer enjoy the taste of broccoli, it's probably not the Lyme disease. Etc. When you blame every last problem in your life on Lyme, people might begin to doubt whether you have it at all. I'm not doubting you. But others might.

6. Finally, live your life. Yes, you are very sick. Yes, it's going to take a long time to get better. But don't make a career out of having Lyme disease (unless you're an activist or a medical professional, or something like that, of course). Try to have fun when you can, try to nurture the love in your life, try to do whatever you can, whenever you can. You'll feel better this way.

So, dear Lymies. I say all this because I've come to notice over the years that some of us get carried away with it, and while this is their right, it hurts the cause. It's true of a lot of chronic illnesses that some sufferers get carried away. But because Lyme is so doubted and controversial to begin with, it's very crucial that we put on a good face for the public. It's unfair. It's totally, wildly, ridiculously unfair that we have to have an illness very few even believe in.

So let's fight this fight. And let's start by being true to ourselves, to our bodies, to our experiences, and to our lives.